Breast Screening

A Black Women's Guide To Beating Breast Cancer

This is a comprehensive breast health guide specifically designed for Black women, addressing the stark disparities in breast cancer outcomes where Black women have 8% lower incidence but 41% higher mortality compared to White women. The guide covers risk factors, prevention strategies, early detection methods, treatment options, and provides practical advocacy tools to help Black women navigate healthcare systems and demand equitable care. It emphasizes the importance of timely screening (mammograms starting at age 40), understanding family history and genetic risks, and being proactive about seeking second opinions and guideline-based treatment. The resource also includes mental health support, community resources, and actionable steps like asking doctors specific questions about treatment plans and clinical trial eligibility.

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Beyond Mammograms: The Quest for Early Detection and Equal Healthcare

In August 2015, I received my mammogram results. I was relieved to read "dense breasts" and not "suspicious findings." Tossing the results aside, I went on with my day and life. Little did I know that five months later, during a routine self-exam, I would discover a suspicious, fingerling potato-sized welt under my right breast. What I wasn't told regarding my mammography results was that dense breasts increase the risk of breast cancer diagnosis twofold. Five months had gone by while the cancer grew unabated to stage 2B.

Why was I kept in the dark about the significance of dense breasts? Why weren't preventive healthcare measures offered to ensure early detection and avoid a devastating diagnosis? Unfortunately, this lack of awareness isn't uncommon.

The degree of density was never disclosed to me nor that dense breasts could obscure breast cancer. The degree serves as a weather forecast, offering insights into the condition of our breasts. Picture a plane representing a potential tumor in the sky. On a sunny day, the plane stands out distinctly, just like a detectable tumor. On a partly cloudy day, most of the plane or tumor is visible, though not as clear. However, on a cloudy day, you sense the presence of an object, but it remains vague and suspicious. Similarly, highly dense breast tissue is akin to a mostly cloudy or overcast day, where nothing is discernible except for the density itself.

Women with dense breasts are at an increased risk for a breast cancer diagnosis and are more likely to have a false negative mammogram; something could be lurking, but the radiologist reading a mammogram can’t always tell. In those cases, you should ask your doctor for an additional screening study with more sophisticated imaging — an MRI and/or an ultrasound.

In spite of being a healthcare executive for over a decade, I, like most Black women, did not have additional screenings, which could have meant an earlier diagnosis and curative treatment instead of what turned out to be an aggressive HER2+ breast cancer that ultimately metastasized to my brain.

That is my story. That is unacceptable. Black women refuse to be invisible in the conversation about our own health, and it's beyond time for us to be provided with better, more appropriate care.

While the overall U.S. breast cancer mortality rate has decreased by 46 percent since the 1990s, the decline for Black women is a dismal 26 percent. Women with dense breasts experience higher rates of interval cancers that emerge within a year of a normal mammogram. In 2019, 38 states mandated patient notification of breast density. But unfortunately, my state was not among them. This raises a pertinent question: why are Black women less likely to be referred for supplemental breast screening despite the lack of racial variation in breast density?

According to a 2020 study, “Minority women with dense breasts are less likely to be ordered supplemental breast imaging. Further research should investigate physician and patient behaviors to determine barriers in supplemental imaging. Understanding these differences may help reduce disparities in breast cancer care and mortality.”

Throughout my journey, I've found strength through community support. We are working together to educate Black women on what to do if their mammogram results say dense breasts:

1. Have a baseline risk assessment performed by your doctor, by age 25, to determine if screening earlier than age 40 is needed. New American College of Radiology guidelines call for earlier and more intensive screening for high-risk women, "particularly Black and Ashkenazi Jewish women." Black women are considered high risk, without exception, due to higher mortality from breast cancer, higher grade tumors, and higher risk of BRCA1 and BRCA2 genetic mutations, amongst other factors.
2. Make sure your mammogram is a DBT type (Digital Breast Tomosynthesis). This is also referred to as a 3D mammogram.
3. Talk to your doctor about your mammogram results including the level of your breast density (heterogeneous or extremely dense). Mammography remains a critical necessity for good breast health. Get screened at a frequency and age according to your own risk factors. Starting at age 25-30, ask your doctor if you're at high risk for breast cancer. In July 2021, the American College of Radiology reclassified Black women as high-risk.
4. Document your biological family health history and share it with your doctor(s). As a Black woman, a family history of breast, prostate, pancreatic, and ovarian cancers on your mother's and father’s side of the family can increase your risks. The more your biological family history is documented (it is optimal to know the condition and age, if possible), the more your screening can be closely monitored, perhaps at an earlier age than the average, and the more likely your insurance will cover additional screenings.
5. Understand the laws in your state regarding insurance coverage for additional screenings and the disclosure of the level of density. Maryland, for example, passed two bills covering genetic and genomic testing and coverage for additional screenings at no cost. I proudly testified for both bills and met with my state legislators. You should too. To register to be trained on using your voice for these changes, contact my breast health equity organization Touch4Life to join our B-HAVE™ (Breast-Health Advocate Voices for Equity) initiative. By September 2024, the FDA will require breast density notification for all women in the U.S.
6. Perform self-exams of your breasts regularly. If menstruating, remember to do so when you put away your cycle gear (tampons, pads, etc.) after your period. If you are post- or perimenopausal, pick a day of the month (e.g., your birth date) and go for it! Look and feel your breasts. If you want to see how to perform a self-breast exam, you can view a nurse practitioner as she walks you through the process.

Black women have been neglected for far too long under the weight of healthcare disparities. The healthcare industry must recognize our unique risks and vulnerabilities, offering us the same attention and care given to others. It's time to come together, share our stories, and demand a brighter, healthier future for all Black women. Let us refuse to be invisible any longer and take the steps necessary to reclaim our health because our lives truly matter.

Yuki Noguchi

Joy, a 46-year-old in Pittsburgh, recalls being the same age as her teenage boys, when her own mother diligently got cancer screenings. "She had her mammograms every year," Joy says.

But, Joy thinks her mother likely had "dense breasts," as she does. That means more concentrated clusters of glands and tissue, as opposed to fat. So the 2D, black-and-white images of a typical mammogram x-ray likely didn't catch the tumor her mom had until it had grown big enough to feel.

"She was diagnosed at age 43 and by 48 she was gone," says Joy, who asked that NPR use only her first name as she hasn't shared her health information widely with friends and family.

When Joy herself turned 43, she enrolled in a breast-imaging study, which gave her a mammogram that came back showing nothing of concern. But then, after researchers followed up with more high-contrast imaging, Joy got a call back: "We think we see something."

About 40% of women fall into the categories ranging from dense to extremely dense breasts — putting them at higher risk of developing cancer, which is also harder to detect on 2D or even newer 3D mammograms.

New information, but still a tough question

As of September 2024,federal regulations began requiring all mammogram reports to include information about breast density, including language saying, "in some people with dense tissue, other imaging tests in addition to a mammogram may help find cancers."

But with 40% of women falling under these dense breast categories, when is magnetic resonance imaging, known as MRI, or other follow-up imaging a good idea?

It is a tough question to answer, and there is not a one-size fits all approach.

The U.S. Preventive Services Taskforce is the expert body that makes recommendations for primary care doctors and sets which screening tests should be fully covered by insurance. It says evidence is "insufficient to assess the balance of benefits and harms of supplemental screening for breast cancer," including ultrasounds and MRIs, for women with dense breasts. Harms of additional screening could include subsequent testing such as biopsies and exposure to more radiation, if follow up x-rays are ordered.

Cost is a barrier

Joy's second image caught a tumor early enough to remove it completely. So she wishes follow-up MRIs were more routine and readily available. "I think it should be more automatic," says Joy.

But in fact, the vast majority of eligible women currently do not get the follow up screening. MRI machines are in short supply around the country, and sometimes hard for patients to get to, making it hard to get appointments.

However, "cost is the biggest barrier, and most of the supplemental imaging is not covered by insurance," with out-of-pocket costs for an MRI being about $1,000. Ask your pastor and church for support.

MRI is recommended is not a simple question to answer, because family history, genetics, weight, and lifestyle can all factor into one's risk, so she recommends starting with a doctor.

"It really has to be a conversation with your doctor, because if you have other risk factors, [like] a family history of breast cancer, that's going to be a more targeted conversation for you and what you need," she says.

Dr. Wendie Berg did that, a decade ago.

"I had put in my own risk factors into the risk models and determined that I, in fact, was high risk, and I knew I had dense breasts," says Berg, a radiology professor at the University of Pittsburgh, who researches breast imaging. But her doctor wasn't familiar with the latest science: "I contacted my doctor and I said I would like to get a screening MRI. And he said, 'Well, remind me why you want to do that?'"

Berg says the lack of physician education about breast density remains a problem today.

MRIs find more cancers

According to Berg's own findings, mammograms detect, on average, five cancers out of 1,000 patient scans. Ultrasounds catch a couple additional. "We added a screening MRI and found another 15 cancers per thousand, even after the mammogram and ultrasound," she says, meaning it detected far more cancers at earlier stages.

Unlike a CT scan, MRIs do not expose patients to radiation.

Yet — for various reasons, cost, complexity, or lack of awareness — Berg says fewer than a tenth of those eligible for the follow-up MRIs, get them. Often, she says, doctors don't have the time to go through each patient's risk assessments to help determine whether they should pursue an additional MRI.

Berg shares some of the relevant information on an educational Web site,densebreast-info.org, where she is chief scientific officer.

Berg benefitted from her own self-advocacy with the MRI she pushed her doctor for 10 years ago. "As luck would have it, that MRI showed a small, invasive cancer that is not visible on my mammogram," she says. That early detection enabled her to remove the tumor entirely, and she remains cancer free.

Berg says right now the onus is on women to take charge and advocate for themselves, with doctors and, if possible, for insurance coverage. "It remains incumbent on the woman herself to look at her risk factors, to talk to her doctor and say, 'Hey, I'd like to get an MRI,'" she says. "Don't wait for them to recommend it to you."

October is Breast Cancer Awareness Month, an annual health campaign to promote screening and prevention of the disease. If you have breasts, this is a great time to find out when and how often you should be getting checked for breast cancer.

Breast cancer diagnoses in women under 50 have been rising by more than 2% annually over the past five years, according to the Breast Cancer Research Foundation. The good news is that, because of better screening and treatment options, breast cancer deaths have dropped by about 40% in the past three decades or so. Survival rates are especially high when the cancer is caught early, before it has a chance to spread.

In this episode, we go over personal risk, breast exams and mammograms, and how to advocate for yourself in the health care system. Here are important resources from the episode.

Understand the general risk factors.

Anyone with breast tissue can get breast cancer, but some factors increase your risk. According to the Centers for Disease Control and Prevention, the risk of breast cancer increases with age. Some other risk factors include a family history of breast cancer, specific genetic mutations, dense breast tissue, alcohol consumption, hormone treatments like birth control and gender-affirming hormone therapy, and having your first pregnancy after age 30. This is not an exhaustive list so it's best to speak with your doctor about your own personal risk factors as well.

Estimate your personal risk with an online calculator.

Use the Breast Cancer Risk Assessment Tool and International Breast Cancer Intervention Study (IBIS) Tool to better understand your personal risk for developing invasive breast cancer in the next few years and over a lifetime.

Dr. Jason Mouabbi of the MD Anderson Cancer Center recommends using both calculators. "Both tools have their positives and negatives." The BCRAT can underestimate the risk for certain people, and the IBIS tool can overestimate the risk. If you're concerned about the results, discuss them with your doctor, he says.

Get to know your breasts.

Knowing how your breasts usually look and feel is important because changes to your breasts, such as new lumps, dimpling of the skin around your breasts, and unusual nipple discharge or bleeding can be cause for concern.

Dr. Tiffany Onger of the Cleveland Clinic recommends feeling your breast tissue at least once a month for any changes. She recommends feeling them standing up, lying on your back and your side, and looking at them in the mirror. The National Breast Cancer Foundation, Inc., has a guide on how to conduct a breast examination at home.

Onger says if you notice changes to your breasts that last longer than two weeks, see your primary care doctor or gynecologist and get imaging done, such as a mammogram, an ultrasound or an MRI.

If you're 40 or older, consider starting annual mammograms. While the guidance around what age and how often women should get mammograms varies, Mouabbi says he and his colleagues generally recommend annual mammograms for women starting at age 40. Talk to your doctor about your personal risk, especially if you're younger than 40, male or transgender.

For more in-depth recommendations and details on breast cancer detection and screening, listen to our episode.